“The most important drug that I take every day is hope.” Julie Flynn, Rare Disease Day 2013 at the Massachusetts Statehouse
The “Festival Of Hope” is in honor of Julie Flynn. She passed away last March from Von Hippel-Lindau Syndrome (VHL). It is a genetic and inherited Disease. Julie’s Mother died from VHL when she was only six years old. Julie was diagnosed when she was 14 after losing one of her eyes to the tumors that are common to this terrible disease.
The quote above explains the name of Saturday’s event. Julie was an amazing person who brought great joy to so many in her personal and professional life. You would never have known she was struggling with a rare and deadly disease.
Maggie Warfield was Julie’s life long best friend. Her daughter Rosie is an incredible 14 year old 8th grader who has almost single handedly organized this entire event. From selling vendor booths to collecting raffle prizes and organizing entertainment. She has been feverishly promoting the event. It will be the subject of a WCVB “5 For Good” segment during the 7:00pm news on 6/21. The Festival of Hope is Rosie’s tribute to the woman she called “Auntie Julie.” 100% of the proceeds will go to the VHL Alliance which is the only advocacy group for this disease and is based in Boston. VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL. Click HERE to make a donation in Julie’s name.
Click HERE for the Festival of Hope’s Facebook page.
Click HERE to view Jule’s speech from Rare Disease Day 2013.
(Rain location is Grafton High School)
Check out my interview with Maggie and Rosie in the podcast below.